Life begins again at 45

beanielou

Blooming kittens :eek:
Dont let it spoil your weekend though.

Bubblesmum

Afternoon dear diary and friends

I really wish I could stop feeling so out of sorts but I am afraid to say I am still struggling.

This weekend, we had friends visiting - should have been down Friday night, but while we were in Mr W picking up a few bits and pieces to say they were late home from work, and really too tired to drive.... (from Yorkshire)

They arrived for brunch in the pub on sat, we stayed in on sat night, and had an Indian takeaway from the Cook range as it was on offer. (saving money expensive eve meal at pub) I was though disappointed.

Managed to do my projector duty sun morning and after an early roast - they left.

I had not had to do much all weekend, but my fatigue levels seem really high... as well as my mental frustration, of feeling so isolated. On Saturday i wanted to stay in the pub all afternoon, not to drink, but just be out in a different social environment, while the others just wanted to collapse on the sofa.

I loved seeing them, its been about 18 months.... but I was left with this feelingof being left behind, as they are so busy with work and play. Despite being tired on the Friday night they were invited out to drinks and a meal! i was early to bed.

Yesterday, afternoon the bubble of normality burst again, OH disappeared off to his study for a few hours and I was left knitting, reading and the tv. Am I 46 or 76.

This morning despite two alarms, didn't stir till gone 10am. I really had to mentally kick my bum, to get me out the door to pilates.

I'm back, and had lunch crying my eyes out to call the midwife. Yes, it was sad a death, but for me it was the sense of community be it life was challenging that I crave.

The silence in these beautiful 4 walls is deafening today.

I try to tell my OH how I feel he listens but doesn't know what to say or how to help, so I end up bickering in frustration. As I feel like I have to problem solve and decide everything in our home. I had done a menu for all week (last night fish cakes), I then said I craved salty fish shop chips last night. An hour after this he said what did I fancy for tea? So I wonder why I a) bother and b) not listened to.

In other news the kitten, has not been squirty all weekend!

beanielou

So sorry that things are tough my friend.
At present I can offer no words.
Keep plodding. Xx

Bubblesmum

Dear Diary and Friends

Well firstly, I have to accept Monday was a complete CF wipe out. For most of the day.

However, I gave myself a talking to and firstly booked an appointment to see my favourite GP, not till after Easter, but I am happy with that as I need to get my ducks in order to know what I want.

I then googled Chronic Fatigue Services in my PCT. As I think part of why I am struggling currently is I have nobody to talk things through with, that can give me insightful feed back - as OH struggles to do this.

Firstly there is a service but based in Carlshalton :eek::eek: google maps says 56 mins well yes at midnight!

However the consultant did a 45 page presentation to all the health trusts it covers and is on line :T:T

Treatment

1. Supplements and lists them - I can now hear you Robinwho listed ones that helped you, I bought them and have fallen off the wagon.

2. Basic Fatigue Management ( RAISE) well I know this as I am an OT and an OT would be implementing this part of the treatment there is link to lots of helpful worksheets on their PCT website :T

3. CBT - well I have mixed feelings on this and I have trained in behaviour therapy and got relevant professional text books as well as self help manuals

4. NICE Guidelines - need to read this

5. Self Help Groups - have googled ME association and need to put info into action.

6. Access to a psychologist

The idea of being referred to the clinic is education over a short period to promote self management.

I think my GP would be saying you already have all the resources 1 - 5 to help you self manage it's No 6 thats the crunch.

Do I - make the effort to be referred to the NHS clinic, to go and hear the experts and get whatever I am entitles to? Is it worth the huge physical effort?

OH has private healthcare and I am covered, originally with Bupa, I went to see a great counsellor locally who is also an OT, we got on really well, and I have built up trust and background with her - so I thought a few top up sessions would be very helpful. To sort my head, and she has CFs background.

Work has transferred to AXA they don't cover counselling :mad: only psychologist and psychotherapis. Now I have a healthy respect for both these professionals and I have no objection in principle in seeing them, they have a different process of dealing with the problem, and that's what stopping me at the mo A) I would have to start again from the beginning b) find one knowledgable in CFS, c) I have seen one in the past and it was a mixed experience with that professional.

I have until the GP appointment to form a view.

I could go back to Counsellor but would need to pay... and as you know pennies are scarce.

Bubblesmum

Morning dear diary and friends

I am looking out the window and although it's very damp. I can see at least 100 daffodils gently waving in the breeze, spring is on its way I hope. :j

My positive focus is on my home today, and catching up on things I have let drift over the last week or so.

Tomorrow is treatment in London, and then OH is treating me to Mrs Henderson Presents in the evening with the rest of our theatre vouchers. He will drive up so only one train journey :j

Then its Marie Curie weekend, and I will be wearing my silly hat for two shifts of daffodil selling.

We went through our menu planning last night, an we have enough food in the freezer to take us to Good Friday. Then all that will be left is fish and apples! However really pleased it has got us through the first term with very little additional protein purchases.

I have just finished the muesli from New Year, I've got one portion of cereal left. which is my aim, so I cut out wheat based breakfasts.

So my 15 minute chores/admin.... needs to begin

Bubblesmum

Afternoon Diary and dear friends

After I last signed off I got lots of chores done. I then went out in the evening to Am Drams and had a lovely evening however I was really wide awake when I got home and didn't get to sleep till midnight which was rather :eek: as I had to get up early to get the train into London.

Friday in the end was mixed, I had a good trip up to town and managed to get a refund on something that I bought last time I was there and really didn't need :money:. My treatment was not too invasive for once and I felt better afterwards.

I took advantage of the Facebook Odeon deal 40% off :money: I went to watch Bridges of Spies which was excellent. Tom Hanks might be in his 50s but it still yummy.

My OH had decided to treat me to dinner and then theatre ( using the last of his birthday present vouchers) and then to drive me home. We took advantage of the pre theatre menu at Browns which was good and then we went to see Mrs Henderson Presents and the theatre could accommodate both my scooter and his wheelchair which was good so I felt my needs were accommodated. A member of staff is assigned to us and helps us get anything we need. However as we approached the interval my body really began to tell me it had had enough I'm really wanted to crawl home to bed. So I struggled for the rest of the evening. It's another lesson learnt I cannot go out after coming up to London for treatment. I so often wanted to make the most of my train ticket and trip up to London. Ever since a child when I was in Guys hospital we would always do something nice afterwards.

Saturday was a real write-off I spent most of it is in bed or on the sofa except from my two-hour stint collecting Marie Curie. Fortunately it was a mild one this year and I didn't get too cold.

Sunday I was projector girl again, and I've now signed myself up for the parochial Church council which is the management committee of the church. I came off it when I first became ill so I think it's quite an achievement that I'm now going back on.

The rest of the day was mostly doing bits and pieces before going out to see Adam Hills at Kingston. OH had also booked this, and I must admit I was feeling really tired, and didn't feel up to going. As we had eaten out on Friday night. We are at home both meals which lunch and tea, Which a few years ago we would of treated ourselves to a meal before the theatre. So I did feel :money: about that. I have to say Adam Hills was hilarious, I had wished that I hadn't worn mascara and that I had also changed handbags and haven't got any paper tissues, so was wiping my eyes with the end of my top. For the entire performance, he is just a great observational comedian no rudeness, a bit risky at times. He ended the show, talking about his father and his battle with cancer (and subsequent death). The power of laughter when all hope has been extinguished. He was totally uplifting. At the end of the night, he asked the audience with no obligation, to donate to the local hospice as they left. When previously I have seen these collections done in the theatre, I see only a few audience members contributing. Last night there was a queue waiting to fill up the buckets. Adams Hills himself was outside, and his bucket mostly had paper in. I appreciate not everyone can afford to donate but on Saturday it was heartening just to have somebody come over and put their shrapnel in. How country wouldn't work without the kindness and generosity of so many people.

We ended the night, getting chips from the local kebab shop - the result of an early tea ! It was the best night we had had in ages.

However with the weekend as busy as it has been, today has been very very slow. However I am creeping forward, and achieving things which is all for the good.

beanielou

All actually sounding good.
Am still on my phone without proper Internet access but routing for you.
When I went to clinics/hospital when wee we always did something afterwards too. Lunch in Goldberg's which was an old Edinburgh institution~~now sadly gone.

Bubblesmum

Dear Diary and Friends

Yes its been a week !

Well monday night I went down with the lurgy and felt rough all week, and my diary was cancelled.

We had booked three nights at a pub with rooms from Saturday, and although I had my doubts as to whether i would be well enough to go, we did, and had a lovely time, doing not a lot, supping a few pints, and exploring the Cotswolds.

We were :money: in so far as we considered, all our extra expenses and kept within budget, including a picnic tea on Sunday night from the COOP for a fiver!

I found a fantastic haberdasher and topped up with bits for my current projects and some on sale sl@ggi knickers!!!

Exciting next few days as I am rearranging the house to make a room into a hobby room for me :T

Need to actually do something so will be back later .....

beanielou

Hobby room sounds good :j
Glad that you are feeling better

Sun_Addict

Glad you had a great time away and that you're feeling better. Hobby room sounds fab, bit like the equivalent of a man cave